Pediatric Sarcomas: Nate’s Story

It all started on a beautiful Sunday afternoon in April 2004. Nate's parents, Aliza and Ben Goldstein, had taken Nate, his brother, Ryan, and his sister, Abigail, to a nearby empty parking lot, where Abigail was learning how to ride a two-wheel bike. The bicycle lesson was followed by a trip to the ice cream shop, a perfect ending to a seemingly average, ordinary day.

When they returned home later that evening, all the kids went straight to the bathroom to be bathed. During the bath, Aliza noticed a very large lump covering Nate's entire left calf. Concerned about the suspicious mass, Aliza took Nate to see her cardiologist father, who lived nearby. “I'll never forget my father's words,” Aliza says, remembering back to that fateful evening. “He said: 'You need to call your pediatrician immediately.'”

When she telephoned Nate's pediatrician and described, with her father's help, the mass on Nate's leg, the pediatrician asked that they come directly to his house. “Not a good sign,” Aliza recalls thinking. When they arrived at the doctor's house, after a quick examination of the suspicious lump, the doctor ordered a CT (computed tomography) scan for that same evening.

“Whose Child Has Cancer!?!”

The results of the CT scan showed that the mass was not a cyst, but further testing was required to see if it was malignant, requiring an MRI (magnetic resonance imaging) scan to be scheduled. Nate's pediatrician scheduled the test for the next morning at a cancer center near the Goldstein family's New Jersey home. When Aliza asked the doctor why Nate had to go to a cancer hospital, the doctor reassured her it was probably not cancer. “Everyone was afraid to say the word,” Aliza notes. Though she, too, was unwilling to admit the possibility, even to herself. “I thought at the time, 'Come on, whose child has cancer!?!'”

After the MRI was completed, the Goldsteins received the call that is every parent's nightmare: Nate had cancer. “My life was destroyed,” Aliza says simply. “Our life as we knew it before finding the lump was now over.” The MRI was quickly followed by a biopsy. The biopsy showed that Nate had a form of sarcoma known as alveolar rhabdomyosarcoma, which is a type of tumor that affects muscle tissue. To make matters, worse, Nate's tumor was diagnosed as an advanced, aggressive stage IV, which had already spread to the lymph nodes in his abdomen.

One in Four Chance — Unacceptable

Still in shock from the news, the Goldsteins sought medical opinions from two different medical centers, one in Philadelphia and one in New Jersey. Physicians from both centers recommended amputating Nate's leg from the pelvis down. “They all said, 'We are going to amputate Nate's leg. We are going to give him chemotherapy and radiation therapy, and even then he will only have a one-in-four chance of surviving,'” Aliza remembers with dismay. “One doctor went so far as to tell us that it was not too late to spend time with our son.”

At this time, one of Ben's friends and neighbors, a cardiologist whose medical school roommate had done a fellowship at Memorial Sloan Kettering with Leonard Wexler, intervened. He made the Goldsteins promise that they would see Dr. Wexler, a pediatric oncologist specializing in the treatment of bone and soft-tissue sarcomas, for one final opinion.

Nate

They met with Dr. Wexler the following Monday. He informed them that he was conducting a clinical trial for rhabdomyosarcoma, which, unlike the standard three-drug chemotherapy regimen, included seven drugs. After examining Nate and reviewing his records, Dr. Wexler stated that the survival statistics they had been given were unacceptable and that he didn't think Nate's leg had to be amputated. “He couldn't promise to change the survival numbers,” Aliza says, “but he was trying to give these kids a better chance at living with his clinical trial.”

The deciding factor for Aliza and Ben came when Dr. Wexler mentioned the late effects Nate would have as an adult as a result of his treatment. “This was the first time anyone had mentioned a future for Nate past the cancer. Dr. Wexler hadn't written off my son. He had given us hope.”

The Goldsteins decided to go with Dr. Wexler because, with his experience treating rhabdomyosarcoma, they knew they could trust him with treatment decisions that differed from what the other hospitals were recommending. “As parents, you're not pediatric oncologists,” Aliza notes. “You've known about rhabdomyosarcoma for a week! You have to choose a doctor you can trust. Once you do, you have to trust him.”

Grabbing Fun Whenever and Wherever Possible

During the first week following the diagnosis, Aliza was so upset that she was unable to eat or sleep. “At some point,” explains Aliza, “a voice in your head says, 'Cut it out. You have to get focused. Your son's life depends on it.' And that's just what we did.”

“ This was the first time anyone had mentioned a future for Nate past the cancer. Dr. Wexler hadn't written off my son. He had given us hope. “

Aliza Goldstein, Nate’s Mother

What followed for Nate, starting in May 2004, were 12 rounds of high-dose chemotherapy.

“It was horrendous,” Aliza remembers, likening cancer treatment to a roller coaster ride. “We became very day-focused. If Nate was feeling good one day then we would do something fun that day. Because you don't know what's going to happen later that night or the next day. We went from being this very planned type of family to a very in-the-moment type. Any fun we could grab and hold onto to be normal, we did. For example, although we're Orthodox, when Nate was in the hospital during Christmas, we even celebrated Christmas!”

A Lifetime's Best News — Remission

Nate with the board he broke in karate

In order to kill any remaining tumor cells, Nate received 48 consecutive days of radiation therapy, stretching from August to October 2004. In December, the results from a series of scans showed that some of the tumor cells remained, necessitating the surgical removal of Nate's left calf muscle. The surgery, performed by pediatric surgeon Michael La Quaglia, was a success, removing the tumor cells and preserving Nate's leg function.

The Goldstein's anxiety level was high when they went in for the next round of diagnostic scans in March. “Dr. Wexler, knowing we were nervous wrecks, called us at home in the evening of the day of the scan to tell us Nate's cancer was in remission,” Aliza says. “It was the best news I had ever received in my life.”

In May 2005, Nate started on maintenance chemotherapy, which he was able to receive at home. And his final day of chemotherapy was completed in October 7, 2005. “On October 8th,” Aliza notes, “we began 'life after cancer.'”

The muscles in Nate's leg had contracted due to the surgical removal of the calf muscle and the radiation treatments. Michael Stubblefield, a physician in Memorial Sloan Kettering's Rehabilitation Service, used a technique that involved 12 weeks wearing what is known as a serial cast, which slowly stretched Nate's leg muscles. The cast was combined with injections of Botox to paralyze his muscles in order to avoid cramping during the stretching process. “Before the procedure, Nate stood on the affected foot's tip-toe,” Aliza says. “After the procedure and the physical therapy that followed it, he could walk normally again.”

“ I was fortunate to work at this institution at a moment when I could offer a family and a little boy with a very serious case of cancer a treatment that was not available elsewhere. “

Leonard Wexler, Pediatric Oncologist

When the Goldsteins look back over the past two devastatingly difficult years and the remarkable outcome, they feel blessed. “We feel that it was Dr. Wexler's insistence on Nate's quality of life that gave our child a chance at a normal life,” Aliza says with feeling. And as proof, she points to an event from this past summer, when Nate broke a board in half with his left leg at karate school. “That was huge,” Aliza says, smiling at the memory. “Dr. Wexler even came to witness it. Our child was supposed to be dead or at the very least not have a leg, and here he was breaking a board with that same leg. It was so remarkable, everybody in the room was crying.”